Not here, not There…

I am sitting in Abu Dhabi, awaiting my second flight of three, home. … returning to my wage-earner role, despite the magnetic pull to continue to be by Dannie’s side as advocate, hair washer, listener, history keeper, voice, case manager, and general overseer running interference, paving the way, softening the blows when ever possible… which has not been nearly enough. (more update later)

Equal pull to be present with Ari as he sorts through his trek to India and moves forward.
A tender, sweet parting leaving Dannie to continue her treatment at NuTech. Such a complicated intertwining of thoughts and feelings. I notice that I am choosing to only give voice to the affirmative thoughts. Period. We are both strong women, and we are anchored in our faith. I am anticipating a joyful reunion with Ari and excited to listen as he sorts through this most amazing experience and the changes and choices ahead.
Praying constantly for healing, for peace and a time when I will not feel divided. As I am in between Delhi and Belmont, I recognize God is in all places… working through so many.

That said:

Long overdue, tribute to Kyler…

Stop for a moment and remember your twenty fifth and sixth years… or look ahead to what you imagine they will be.

In a 2010 NY Times article the decade twenty’s were likened to the pluripotent characteristics of the human embryonic stem cells (near and dear to our hearts)… directions and possibilities abundant, and decisions once made, and actions taken, have lasting ramifications. This is the decade in which adventures, experiments, relationships, travel can be embarked on with a freedom that will, for most, never be revisited. What Is It About 20-Somethings? By ROBIN MARANTZ HENIG;Published: August 18, 2010

Many are curious how in the world a young girl, bed bound for so many years, has a significant other who is so clearly present…

The shortish version: Ari and I were surmising how to help Dannie stay connected to the “outside world”. Well-intentioned friends had fallen away… the teens and twenties are a time for self exploration and adventure. Sitting bedside, bearing witness to suffering, is not a path that the average developing teen/young adult chooses to commit to. It is not for the faint of heart, it challenges the belief in immortality that is the framework for the abandon and adventure that is sandwiched between episodes of extreme discipline to education and career development. School dances, trips to Tahoe, a regular school day, or just a night out had long been impossible for Dannie, and often she did not have the stamina to even have a visitor sit with her. Then there was the dimension of not having shared in the common experiences… what to talk about, if there was even energy to talk. For a teen to hang in there would require personal sacrifice at a time when mobility and self-directed exploration are promoted and culturally sanctioned in the context in which Ari and Dannie were growing up. It is what they would have been doing, minus a miniscule tick or two and a few zillion mold spores somewhere along the line…

So, enter Facebook… Ari and I decided to build a page for Dannie, so that she might have some peer contact. Bittersweet and risky… largely not helpful for her to witness all that she was missing as her childhood friends went on to college, realizing the dreams that she had on hold. She rarely, then and now, finds this a place to go. That said, on a rare visit to her FB page, a conversation was started with Kyler, when he “friended” her (a friend of a friend), and she was sufficiently intrigued to answer. The little energy she had to text, slowly over months, built a friendship without the demands of keeping time agreements, no need to be able to get up and get dressed, or acknowledge her illness. She got to just be Dannie, without the strain of cancelled plans, explanations, experiences of being left out, pressure to be “normal.” The relationship that emerged was based on a sharing of hearts and minds.

Then one day, after a period of treatment re-evaluation, Dannie decided to embark on a repeat regime of IV antibiotics… and as we drove to San Jose to have her second passport inserted into her arm, she was texting… and when asked by the “texter” who I later found out to be Kyler, what she was doing, she answered candidly. Hours later after the surgery, a follow up text from Kyler revealed that he had been on the internet learning about Lyme, asking intelligent and caring questions, and most notably to Dannie, not moving on…

Months later he drove from Loomis, where he was living, to Belmont for them to meet in person for the first time…the air was “electric” … cliché, but true. Kyler survived meeting me, the interview, the record check, the photos of his driver’s license, and license plates…That was just short of two years ago.

In the months that followed he relocated to the bay area and dedicated much of his life to being beside Dannie actively supporting her passionate pursuit of health. His ardent commitment to her through all that has transpired contradicts all that is “normal” for this stage of self-pursuit… he has often been selfless, tireless, digging deep “one more time”. Their first meeting, he held her hair out of her face as she was throwing up, stuck laying on the floor in her friend’s bathroom as he sat by, eventually carrying her to the couch… the “not pretty” dimension of her illness immediately unveiled, REAL.

To date they have been on four dates, and as Kyler says, “they have been magical.” Both say that they will never take anything ANYTHING for granted. They do know how to be in the moment, don’t need ‘entertainment’ to enjoy just being in each other’s presence, and grasp the precious meaning that is inherent in each moment of human life.

Last year Kyler, Dannie and I ventured to Santa Monica for her to receive rTMS, repetitive transcranial magnetic stimulation, an intervention intended to reset the pain center in her brain. This was six weeks of agony for Dannie, and Kyler provided care throughout as I traveled back and forth to work… sleepless nights, massage for hours, soothing, practical/hands on care giving, preparing food, lifting and carrying her, providing distraction from unbearable symptoms, looking for ways to insert “normalcy” where ever, whenever possible, keeping a supply of movies on hand, cheerleading, praying, reading aloud, encouraging, showing no disappointment for hopes unmet, celebrating any moments of positive change no matter how small, empathizing, holding, learning energy medicine and using it, sitting quietly in the dark for hours, breathing, and repeating all of the above, day after day after day. We tag-teamed for part of the stay…nights when I sat behind her, bear hugging her, while he massaged her legs…midnight, one, two, three….

Many days and nights he and Dannie went it alone. Without him, she would not have been able to receive this treatment. He contributed his presence, fully. No complaints, tireless.

How many 25 year old men could live in such close quarters with their significant other’s mother under such stressful circumstances, with such expectations and demands? I am known to be certain what my daughter needs and deserves 😉 …and I am comfortable expressing myself. Let’s just say that Kyler is able to really “hear” without defensiveness, and to be a part of a team, to make sure that he manages to take care of himself so as not to crash and burn himself and to roll with ever-changing circumstances.

He has given tremendous love, tested, tried, and often devoid of any perceivable self-serving motivation.

After a week in India, Dannie’s health declined and she was transferred to another hospital ICU. I had not slept for days. I knew that it was not wise for Dannie or me, for me to continue to go it alone as her sole caregiver. I was dedicated to protecting Ari’s healing and not allow him to become a caregiver, amidst his own healing, despite his readiness to do just that. I prayed, called home, explored the possibilities for reinforcement, and with the help of Wayne and Lorri finding flights (donated miles by Harold) Kyler made his personal arrangements was here in two or three days. He remains at her side.

Dannie found that being loved separate from her illness, and including her illness, having a present and future that included a meaningful relationship, that healing could be a tangible real thing. She acknowledges the love of her brother, mother, family friends that have stayed in her corner, and Kyler, have saved her life…. You are among that group.

Background In the fall of 2001, Ari and Imani (Dannie) became very ill. This caused them to be unable to attend school, due to tremendous pain and discomfort. Subsequent to a flood caused by a pipe burst in their San Carlos, California, home, toxic mold growth was discovered, to which their ... Continue reading →